And so it begins...

[Guest Motherbear]

My son was diagnosed the first time in March 2012. It was an alarming and traumatic experience for everyone involved. My son went from what seemed an out-of the-blue compulsion of "I just have to touch things" to within about a week, could not be alone without me, would not eat food because he thought he would choke, walked in circles, started to swear out loud, thought he would be poisoned by swallowing toothpaste, etc. etc. All the while I was trying to help him, the school called and said "we have a problem". He was never, ever, ever like that before! Model student, lot's of friends, lots of extra-curricular activities. I'm thinking group home in the future when the psychologist the school referred us to asked over the phone:"Does your son have a history of Strep?" "Yes" "Recent?" "Yes" "Sounds like acute-onset OCD caused by Strep Throat", in other words, PANDAS! Wow! I could not believe it, then it began to make a lot of sense as I looked back on his history of multiple, multiple infections: Strep/bronchitis/sinus infections/walking pneumonia/. We were lucky that our pediatrician believed that PANDAS was real, and confirmed the diagnosis. The problem is, no real protocol for treatment. She has tried and done well, but it is bigger and badder than what her experience is with it. In March, he was on a 10 day dose of antibiotics, and miraculously the anxiety and tics began to go away. When we started CBT with the therapist, he had 18 tics. By July, the therapist said, "He's good now. You don't need to come back". What a relief! We did all the sporting camps, hung out with friends, and had a good summer.

 

Then school started. On Sept. 5th, positive for Strep. OCD coming back. Missing school. Missing sports. Not hanging with friends. Sick/Pale/Anxious every day. 10 days of antibiotics. Starts to feel better, but anxiety lingers. Go back to psychologist. Oct. 9th - I see the anxiety and "Stricken look" Big pupils, dark circles under eyes, pale and not eating/sleeping very well. No sore throat. No fever. On a hunch, I take him for a strep test. Positive Rapid Test! WTF? 7 days later, 3:00am he wakes up in terrible throat pain and a fever! Anxiety and new tic: head rolling. cracking knuckles. Fear of Mom dying. Fear of sleeping.We get on Augmentin. Go back to psychologist who confirms that the PANDAS is running the show, and it's time to go to a specialist. She calls the GP, who does a referral. No disrespect to doctors, but they have no idea what we go through at home! They have no idea how terrified our kids are as they go through this! There is NO sense of urgency, this is not "an emergency". Oh, really? It is to me! It is to my son! The soonest appointment we could get was with a NURSE PRACTITIONER at infectious disease on Oct. 31. What a fun Halloween my 11 yo will have. I called the Mayo Clinic, "The Mayo Clinic does not recognize PANDAS as a disorder, but if you have symptoms you'd like us to treat, we could take a look". Seriously? They said the earliest we could get in is in 3 months! What do I have to do to get help for my son NOW? Lie? Take him to the emergency room? Jump on a plane (if I could even get him on one) and take him to Chicago? What are some of the strategies that you use to get help? If my kid broke a leg, there is triage, x-ray, surgery if needed, pain meds, cast, etc., etc. immediately, but if his brain is broken by inflammation - we DO NOTHING?? Take an antibiotic and call me in the morning?? I am so frustrated and depressed!

Thank you for letting me vent. I am so grateful I have a place to go to express my frustration, and hopefully get feedback. Sign me, Motherbear

[1tiredmama]

Hi, Motherbear. I'm so sorry that your ds, you, and your family are going through this nightmare. The sad truth is that there just aren't enough knowledgable doctors out there to treat our kids. Most of us wait months to see a specialist, and it's an agonizing wait. We waited 3 months to see ours, then it took another 5 months to get my ds the plasmapheresis that his specialist prescribed during our first visit. We felt so helpless. Is it possible for you to show your pediatrician some research that indicates the use of long-term antibiotics for PANDAS? Your son needs more than a 10-day course. Maybe that could get your ds through until you can meet with a specialist.

 

Just yesterday, while my son was in Georgetown University Hosp. being prepared for discharge after a plasmapheresis, I had the opportunity to speak with two young residents who told me that they had not heard of PANDAS until they met us. I asked them to consider specializing in the care of PANDAS patients. Why not, right? I'll talk about PANDAS to anyone who will listen. The current state of affairs is unacceptable.

 

Keep posting. We'll be here to help you get through this.

[beeskneesmommy]

So sorry. I know how frightening this is. Unfortunately, we have been at this for several years. Where are you located?

[PowPow]

how old is he?

would he qualify for the NIH IVIG study?

 

go to clinical trials.gov and search PANDAS

I am thinking the multiple strep / exacerbations might be an excluding factor for him.

Would a phone consult with Dr T get things rolling quickly?

Perhaps advice for parents and practictioners

would be a good resource to print or take to your GP? It give antibiotic recommendations- maybe some place they woudl feel comfortable doing to help out now, while you are waiting for your next step, whatever it may be.

[LNN]

The sad news is nearly all of us have been in your shoes. Most likely, you will need to get on a plane or in a car to get to a specialist. You can call doctors locally, but many will assume you're doctor shopping and won't help. Some may say "come in", take your money and then lecture you on how Pandas isn't real. And the really sad part is that things are better now than a few years ago.

 

The first thing you need to try to do is convince your pediatrician to prescribe at least a 30 day script of abx. For support, you can guide your doctor to this site from the International OCD Foundation - http://ocfoundation.org/PANDAS/ You can also show the doctor that Rogers Memorial in Wisconsin is beginning to treat Pandas http://www.prnewswire.com/news-releases/iocdf-conference-offers-rogers-memorial-hospital-a-springboard-for-future-collaborations-166460796.html (they are just getting their toes wet - not sure I'd rely on them for treatment guidance - they'd likely turn to Dr Jenike - but it would show your pedi that a major hospital recognizes pandas).

 

The second thing you'll need to do is try to reduce the inflammation that's contributing to symptoms. Most of us use Motrin - every six hours for a few weeks straight. It won't take care of all the symptoms, but you should see a reduction in certain symptoms. It has to be motrin (ibuprofen) - Tylenol doesn't seem to work. Other things that will help to some degree are supplements that support the body's immune and anti-oxidation systems - zinc, B6, alpha lipoic acid, vitamin C, quercetin, lecithin or phosphatidylcholine (may help strengthen the blood/brain barrier). Not everyone uses supplements. But if you chose to try any of these, only add one thing at a time so you know what helps or what doesn't.

 

In the meantime, you're probably going to need to get on the waiting list for an appt with a specialist - someone willing to put your son on prophylactic abx to prevent another episode. Each specialist has their preferences on how to treat Pandas. If you're going to have to travel regardless, you may want to research each doctor first. Under "helpful threads" at the top of the forum page, you'll find a thread called "doctors who have helped us".

 

If you aren't able to get a longer dose of abx, you can go over to the lyme forum and ask about natural products that have anti-bacterial properties. Due to the length of time lyme patients need to be on abx, many turn to natural supplements, so you may find more info there than on this forum. Or you can do your own search.

 

For therapy, CBT helped my family but that was because OCD was only a small part for my kids. Anxiety was a larger piece. But if OCD is big portion of symptoms, you'll need ERP therapy - from someone who has a lot of experience in ERP - to give your son tools. Therapy generally isn't that effective at the peak of a flare but is very helpful on the way back down.

 

I know you're in a terrible, frantic place right now. But know that you will eventually get on top of this. Flares do end.

[EmilyK]

Sorry it's been so hard but you are in the exact right place to vent. I thought I was going to lose my mind with worry last spring if it weren't for some of the good advice and ears on here. We spent from Sept 2010 to April 2012 figuring out what was wrong with DS and then many months wait to get in with a specialist. I wouldn't have found the right care without this group. My DH has degrees in rehab therapy and is a paramedic and was just considering going back to school for nursing. I said heck with nursing, go into immunology and specialize in PANDAS!

[Guest Motherbear]

Thank you for the replies and thank you for the very helpful information. We are located in the Twin Cities of MN. My son is 11. Last May, we applied for the clinical trial, at that time the cut-off mark for first episode was 6 weeks, we were past it. Now they extended it to 6 months, and 2 weeks ago, I called again. My son met all the criteria, but we were denied because we were past the 6 month mark (we are at 7 months). Our GP will prescribe Augmentin as a prophylactic for the time between the end of his 10 day cycle to our first appointment Oct. 31. What dose do people have their kids on for a prophylactic? Just curious. He was on Cephalexin previously, but it stopped working so we switched to Augmentin. I feel like I'm a deer in the headlights. I've been reading and reading and reading online... I so appreciate the direct communication.

[bigmighty]

My DS is 14 and weight 100. He is on Augmentin 875 2x daily as prophylactic. When he was exhibiting severe symptoms, the doctor did a 19 day steroid taper starting with 35 mg. Two months after the steroids, DS finally went into remission. During that entire time, he took motrin 3x daily and it was extremely obvious if he skipped a dose. The first few weeks on Augmentin, the symptoms got worse, but we were advised to continue anyway and see if things improved in week three. They did, then we added the steroids, and saw more improvement.

[EmilyK]

My DS is 7 and about 50 pounds on Augmentin 500 2x daily since Sept 11 and now just adding a steroid taper and Zithromax 250 1x day. He also goes for Cognitive Behavioral Therapy which has helped a lot and gets OT at school.